Ethics and the End of Life

Most of our ethics consults involve patients at the end of their life. This is, of course, a sensitive time where each individual situation is different, and if there are many stakeholders, figuring out what's right for the patient can be obscure. Should a patient with both liver and kidney failure who is not a transplant candidate be offered dialysis? Say their liver disease and its complications are so advanced that life expectancy is only a few days; should they be offered dialysis? What if the goal was for them to be alive when family members fly in from other states and dialysis is necessary to bridge them to that point? What if you keep them alive for their family members? Do you then stop the dialysis?

It's easy to write generic summaries of these situations, but when you dig your teeth in, you find that every position is nuanced. From an ethics standpoint, we try to clearly capture all the factors going into a decision. What is the medical situation and what are the achievable medical goals? Can the miracles of modern medicine keep the patient alive, or is it futile? Can we keep them alive for a few days to achieve a short term goal? Can we keep them alive to reach evaluation for transplant? We try to understand the patient's preferences. What are her values and goals? Have prior preferences been given? Can the patient make decisions or do we rely on substituted judgment?

Most people jump to the third arm of decision-making: quality of life. What kind of life do we expect the patient to have, if medical care succeeds? What disabilities or dependencies might the patient have? How does the patient's values influence the way we weigh the quality of life for the patient? Lastly, we look at the context: are there conflicts of interest? Do legal, religious, or public health issues come into play? Who are all the stakeholders and what are their positions? Do we need to think about allocation of a limited resource?

In my experience, end of life conversations often hang up on just a few issues: probabilities and coping. In these situations, the likelihood of a "good" outcome is often nebulous, and both clinicians and family members struggle with the fact that the possibility of a good quality of life is low but not zero. If a surgery will work only a minority of the time, how do you weigh those risks and benefits? Coping is a challenge from family members who are ever optimistic. Primary teams struggle with having family members understand the severity of the situation, and when there is an incongruency between the family's wishes and the achievable goals, the ethics consult team often gets involved. Sometimes this is simply a communication or understanding issue, but more often than not, it's an acceptance issue. I completely understand how the end of someone's life can be hard to accept, but as an impartial ethics consultant, my goal is to objectively outline all these factors to do the right thing for our patients.